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getting well

Those of you in treatment for a serious illness know what this title is all about: trying to figure out what will bring recovery or remission without making you feel worse! Oh yeah. Patients battling chronic illness talk about “herxheimer reactions.” That is where either die-off or some kind of healing crisis brings on worsening of symptoms and even new, noxious symptoms. Not fun. So what is a person to do? Unless otherwise advised by your trusted healthcare practitioner, here are some things that have been helpful for me:

Do what you can to keep your bowels moving at lease once every day, minimally!

Step up your preferred method of detox such as salt water baths, infrared sauna, colon hydrotherapy, and exercise as tolerated. Even massage, physical therapy, and chiropractic care can help release waste products trapped in your tissues.

Pray. The Lord cares, hears, and will lead you unto Himself if we but call upon His name: Jesus Christ. There is no greater comfort than this Gentle Reader.

So this is where I am at these days. Last month I had to take a nasty antibiotic for the same infection and it hurt me badly so I ended it at the short end of the recommended treatment range. Then I stepped up nutritional supports before adding a new treatment. I tried to add a new biofilm-buster when treating a gut infection and reacted poorly, so I will take a break from it for now. This month I was able to tolerate hot lemon water with manuka honey which is a combo I have not tolerated in years! Changing brands of glutathione helped me to start taking this critical element in the 3 phases of detox, yeah God! Also, using a combination of binders has helped slow down some overnight convulsive episodes. I hypothesized that killing infections released toxins inside of the bacteria and fungi targeted, contributing to an increase in episodes. So these days I am really glad for the leading of the Holy Spirit, and a myriad of webinars from really smart researchers who suggested binders. “Yeah God” for the relief that has followed.

I guess then it is time for a nap. No matter that it is a beautiful day outside. Naps are a beautiful thingy too ya know. Lord willing, I am going to get well!

No plant reacts instantly to a brief change in conditions. But a change that persists is an invitation to wake up. (From the Dirt Simple blog.)

Lately I am finding myself in a place in my world that brings me to a humbling yet screeching halt. I ask: what has happened to the me I once knew and where the heck did I land? The Lord knows the journey that has transpired; the witnesses have varying accounts of this or that as well. But it is the markers in time, the events out of the ordinary that bring the changes to light, that clarify what is actually seen. Let’s see if I can explain a bit more about what is going on over here as one of those episodes hit me hard . . .

Three days ago the daily seizure attacks that I have suffered for 5 years ramped up to over SIX HOURS PER DAY. One day these were all in a row, virtually without ceasing until the wee hours of the morning. The next day I got a divided dose of 3 1/2 hours in the morning then an encore of SIX MORE HOURS in the evening! I cannot even describe to you the mental and physical anguish this brings. Time stops. A single breath, one then the next, is the only measure in my mind of the clock of life ticking forward. Difficult decisions got made between my beloved and I resulting in his cancelled trip getting replaced with the sights and sounds of another hospital emergency room. The drug they gave me helped. Miraculously, the convulsive spikes are but a blip here and there for now.

I have had over a day now to contemplate what life might be like to be normal again. Indeed the pain has gone down some, the brain fog got less misty, and my ability to move improved. So I completed a small garden project yesterday and walked our dog this evening. I think that the ER Doctors who have told me that this illness isn’t biological are dead wrong. Stop the seizing and I don’t need a psychiatrist to tell me to get back into life. I don’t need convincing. It just happens!

There is much to figure out right now. Will I get to work on more treatment like taking down viral infections? How long will I stay on the new medication that could hurt me if it was too long? What will I really do with my life should this process of healing continue? I am hopeful again and that is good. Alas it is poetic that these changes should occur as the earth warms from the cold of Winter outside. Unlike the plants that are either remaining dormant out there or are testing their new growth with some surges in our Spring-like weather lately, I will wait to wake up all the way. In the meantime maybe I can do some good with this wee bit o’ energy. After all, there is no rushing a beautiful awakening to a new life.

Five years is a long time to have been asleep.

I bought a new truck like my Dad’s just 5 days before a kayaking trip changed my life forever. I got sick from the water. I don’t know why I told you that. It’s been a long detour. Now things are changing wildly. Maybe the new beginning will need to involve a little road trip in my sweet ride? To the nursery just out of town of course. They sell bags of shredded pine bark compost that should fortify our garden vegetable beds nicely.

In my profession of occupational therapy when I specialized in mental health, I often asked my patients to describe a typical day in his or her life. A practitioner can learn a lot by the presence or absence of structure to one’s routine among other characteristics. Someone who is depressed, for example, usually starts the day later with a disrupted sleep/wake cycle and has difficulty keeping a meaningful routine. The days often lack variety, physical activity, creative pursuits/hobbies, social activities, appropriate self care, and regular breaks (for sleep and relaxation). This can lead to a lack of satisfaction with how a person spends his or her time, an altered sense of identity in the absence of meaningful roles with which to identify, and can even erode the structure needed for at least part of the day that is needed to manage everything from daily habits (self care routines, for example) to emergencies. The person spends an extra amount of energy just getting through the day and the day lacks enjoyment as well. A person with an anxiety disorder or an addiction often presents with a completely opposite activity schedule generally characterized by chaos! Perhaps the mental health issues came first? Or was it the challenge of achieving a balanced lifestyle in one’s living dysfunctional environment that eventually compounded the issues? It was my job to figure out the answer these questions and to design an occupational therapy treatment plan accordingly.

I have written on the topic of time management before but not within this context. And not this personally. I’ll leave out the assessment forms, graphs, charts, comparison tables, high math, and excruciating detail that would afford me a truly cathartic experience but provide you with a very boring blog post! Perhaps this summary will be more meaningful than a formal occupational therapy evaluation?

This is what it is like to center one’s life around recovering from a serious illness.

Trying to get enough sleep to function: 10 hours per day

This includes time that feels wasted trying to fall asleep, waking and go-to-sleep convulsive episodes, recovery time from the latter of those two, ruminating if I should take nap or not during the daytime (increase the hours if I am too chilled/sick to make a decision), waking up in the middle of the night to use the bathroom, additional episodes trying to go back to sleep after getting up, waking up when my beloved is snoring post exhaustion from caring for me, more additional episodes trying to go back to sleep, bedtime preparations (donning the blue light-blocking glasses to foster melatonin production, experimenting with bedtime supplements, arranging pillows and other positioning devices to minimize pain, pre-heating the mattress pad heater to minimize the shock of cold sheets that can trigger seizure attacks), preparing my emergency “lunch” bag of waking supplements/water/snack (to manage blood sugar drops, dehydration, and remedies that sometimes help), struggles to enjoy nighttime snuggles with my beloved husband until the episodes start, and most definitely: talking to Jesus!

Medical appointments and treatments: 3.5 hours averaged per day across the week

Medical activities include appointments with my Family Practice Physician/Chiropractor, other Doctors and professionals, IV antibiotic treatments at the hospital 3x/week and recovery time before I can go home, transit time, scheduling, communication (phone, internet, text, and messaging), coordination of transportation when needed, various lab test procedures, detox treatments, pain management-related services, and preparing all food/records/water/supplements/detox materials needed for each appointment. “Treatments” also include various methods of detox; foot baths; salt/mineral baths; skin brushing; liposomal, topical and oral supplements; updating my daily treatment log; medical filing/billing; special nebulized and dissolved supplements; and an occasional use of essential oils. (For the past month I have had an average of 7 medical appointments per week! Eeeek!)

Food and nutrition 3.5 hours per day

Includes making dinner and lunches for my husband daily; making separate, special diet for myself every meal (!); shopping/ordering/freezing/processing groceries from 7 or more sources; planning (research and list-making); portioning-and-freezing (since no cooked food can be stored for more than 24 hours); recipe conversions/managing recipes; updating quick reference sheets of current protocols to keep myself sane and moving forward; and symptomatic adjustments as necessary.

Research and learning 1.5 hours per day

Online medical research dominates my thirst for both information and recovery. I also include here the review of professional literature and various publications, blogging about various health topics at http://www.justjuliewrites.com, and the investigation of various treatment approaches and providers via a variety of outlets including social media.

Socialization 2 hours per day

Whether connecting with my really smart and beloved spouse (Steve), texting/messaging/emailing friends, talking with friends or family on the phone, sending someone a card, or the rare chance I get to meet with someone in person, socialization is a highlight of each day! Skyping with a couple of gals regularly for prayer, scripture, some laughs and tears has become a treasure! Social isolation plagued me for about 3 years of these past four years of illness when I had to stop everything: Bible studies, church activities, womens’ retreats, visiting, most travel (when all of our family is out of State), etc. For a long time my most regular communication outside of our home was largely limited to superficial chats on Facebook! Many people have left my life . . . Thank the Lord for those faceless acquaintances on Facebook who were there when I was awake in the middle of the night!

Christ-centered activities 1 hour per day

Here’s another improvement in consistency that includes listening to our pastor’s messages online (since I cannot be in the building due to sensitivities), reading my Bible, prayer, some blogging, and the reading of inspirational Christian publications (ministry newsletters, etc.)

Extreme avoidance activities 1 hour per day

Extra loads of laundry, additional cleaning, wiping surfaces with a diluted ammonia solution, management of various masks, preparation of barriers to minimize exposures in public places, nasal washes, and a myriad of other activities not reflected above.

Physical activity .75 hours per day

This is the newest addition to my daily routine and comes in the form of more regular housework, walking our dog once per week, 10 minutes on a stationary bike once per week, and some gardening. This figure is divided by the total over 7 days: lately I can move around a little longer about 3 days per week for more than a few minutes in a row, yeah God!

Self care .5 hours per day

The time spent caring for myself has only recently increased to improve my appearance sometimes. It feels good.

Recreational and Creative Endeavors .25 hours per day

Herein lies my greatest weakness and greatest area of improvement since starting treatment for chronic Lyme disease. Until now there hasn’t been much fun: sewing was limited to mending (!); I couldn’t tolerate listening to music, was too sick for kayaking with Steve (my River Bear), and reading consisted only of my Fine Gardening magazine, my hubby’s war-hero novel, and a few monthly local gardening newsletters. I sold my jewelry business last Fall and my creative juices stopped as the illness got worse. Maybe this summer I will actually be able to work in the public garden for which I have volunteered? Stay tuned! Things are looking up! This past week I was able to work in our own garden for 3 hours: a very physical activity as well as something that I love!

So putting on my occupational therapy hat for a moment here is my brief O.T. Assessment:

The loose schemata above reveals my obvious need for more physical, non-medical self care, in-person social, and recreational/creative activities to achieve a balanced lifestyle. Incorporating other people into the ones that I am able to pursue will probably make everything more fun and meaningful in addition to increasing social time. Success will depend upon the ability to avoid noxious exposures until my reactivity goes down; gratefully we are entering into the warmer months here in the Midwest so doing things outside is more possible. As I eventually spend less time in medical and medical research activities, I hope to pursue more of a primary occupational role either by developing my Two Step Solutions business or returning to traditional employment in a suitable environment. Volunteer work perhaps at our local Extension Office may also increase. Keeping my occupational therapy license current, continuing to learn, developing some internet and e-commerce skills, and writing, Lord willing, are strengths that may add to the possibilities without too much additional retraining.

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I am grateful to my fellow sojourners who have kept me sane when things have been out of whack! I look forward to finding a way to give back to them and others; perhaps this would be by sharing how the Lord crafted this story or simply living a meaningful life after serious illness. I will definitely take the time I need to make a good transition knowing that there will be some good days and some that are less so.

8 Oh, taste and see that the Lord is good;
Blessed is the man who trusts in Him!
9 Oh, fear the Lord, you His saints!
There is no want to those who fear Him.
10 The young lions lack and suffer hunger;
But those who seek the Lord shall not lack any good thing.

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Disclaimer

Gentle Reader: I'm writing this blog to share my story, to instill hope, and for general informational purposes only. This blog is not intended as, nor should it be considered a substitute for, professional, legal, or medical advice. Take care, JJ